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Benign fasciculation syndrome (BFS)
Not sure if this is the right place to ask this, but I'm really not sure how to interpret what's going on. I'm 40, have had random twitches now and then around my body for a few years and ignored them. Mentioned it to my Doctor last year during my annual routine health check and she said it's likely just stress and ignore it. Got sick a month ago, high fever, headache, dizziness, chills, and near constant twitching in different spots all over my body. My knees were going crazy and my biceps were twitching, I felt like my body was malfunctioning. I was also itching all over and my extremities were aching, especially in my feet and hands, but when I pressed or touched my feet or hands, there was no pain spot.
Two weeks after I got referred to a Neurologist who checked my strength, did not do any EMG or MRI, no other tests, just testing if I could physically push back or feel anything below my knees and past my elbows. He laughed and said I have benign muscular fasciculation syndrome and gave me some Xanax. I went for a second opinion and got the same diagnosis, benign muscular fasciculation, and was asked to return after a few months to check on me. The twitching is not as constant as before, but it's still happening, arms, lower and upper legs, knees, neck, shoulder, chest, they last a few seconds and stop. I can't sleep, the itching and the twitching wakes me up at night. The twitching does not go away when I move the muscle, it keeps twitching. Has anyone else ever had anything like this? If so, how or did it resolve?
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I too have BFS but the call mine CFS...CRAMP FASCICULATION SYNDROME. I have had it for 4 years now, not precipated by any illness. Starting with a twitch in my left eye and has progressed to twitching, mostly in my left leg, knee to foot and right triceps area. Cramping all over, mostly hands, feet and rt arm. I can handle it during the day but at night when I try to sleep it is very disturbing and disruptive. Been to 4 neurologists...lots of meds...no cure...some nights better than others.
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1 ReactionIt is baffling. I'm sorry they haven't been able to find something that helps you yet. I have some cramping too, at times. Some days are better than others. It almost seems like I have a good day or two, then a day or two with more fasciculations and cramping. It doesn't seem to correspond to amount of sleep or work. If I find out anything helpful, will definitely post it.
They certainly are annoying. I sometimes have a day or two where I'll get small spontaneous jerks, mostly in the arms, but that passes. Just when that seems to be gone, it will come back for a bit. Also, weird sensations different places in my body and numbness, especially in my toes. That passes, too, then may appear at another place. It sounds like your GP doesn't think it's anything to be concerned about, but it is frustrating after a while. Especially when you have no idea why it happened. Will post what the neurologist says. My appointment isn't until November, unless they have a cancellation.
Hello All,
Thank you all for sharing your experiences. I'm sorry you / we are struggling with this disease. I'm in my 50s now and was diagnosed with BFS / CFS in March of 2020. I've seen several neurologists and had a couple of EMGs to rule out other conditions. I've given gallons of blood but all my labs have come back "normal." Like many of you, I have not been able to identify the "cause" of the cramps and fasciculations. I did have a virus prior to onset of symptoms which caused dizziness and vertigo. I also was doing a bunch of aggressive physical therapy to rehab a knee injury. I also had job and life changes ... so who knows ... ?
My symptoms are similar to many of yours. Fasciculations are persistent in my calf and and lower leg muscles. I also have constant cramping in my calf muscles. I will sometimes get night sweats. On rare occasions the cramps are really bad and will wake me up in the middle of the night. There are days when my quadriceps and hamstrings will feel "rubbery", kind of like I just ran a sprint... when in reality I'm doing something simple like washing the dishes. I also have burning in my feet, but only when it is quite warm. I will at times get tingling / pins and needles in my mid-back. Mostly it feels like someone / something is trying to "peel" my calf muscles off of my bones. ALL these symptoms will "subside" to some degree when I exercise or am fully engaged in an activity or a film or a book... but if I'm idle they can be very noticeable. All seem to be worse in the morning and subside a little during the day.
In order to help alleviate the symptoms I have tried prescription medications and supplements. My experience with them is as follows --
Prescriptions --
*Gabapentin -- Did nothing to stop the cramps or fasciculations. Caused really bad swelling in my feet. Stopped taking it
*Tegritol -- Developed a DVT in my leg and got Peyronie's Disease within 3 weeks of being on this medication. Subsequently I was diagnosed with APS (Anti-Phospholipid Syndrome). Whether these issues were caused by the Tegritol or just a coincidence I will never know. But I stopped taking this one.
Supplements --
*Magnesium Glycenate (LOTS of it -- 1 teaspoon 2x/day... gives me diarrhea...)
*Vitamin B-12
*L-Arginine
*L-Carnitine
*Potassium
*Vitamin E
Other --
*1:1 CBD:THC edibles. I take one after dinner -- my new dessert. I believe it helps me sleep through the night. I also feel that it alters my perception of the pain and makes it less intense and focused and more diffuse.
*Tylenol -- I take 2 extra strength Tylenol at night before bed
*Diet -- I've tried the KETO diet but lost a bit too much weight. Now I'm just focused on eliminating sugar and bread. I also cut out caffeine.
*Exercise -- I've been an athlete my entire life. I played college basketball. I bike raced after college. I've always been active. I continue to ride my bike, swim and lift weights. I will stretch 2 days per week and also use a foam roller and a theragun. I understand that "exercise intolerance" is one of the issues that comes with BFS / CFS. It is certainly more difficult and painful for me to bike and swim now -- however what is odd is that my swim and bike times are the same as before the CFS ... so while its more painful my "performance" / "power" has not changed. I believe despite the pain the exercise does more good than harm and it certainly helps with my mental state and gives me the sense (Illusion?) of having some control over my body. Plus ... endorphins!
*Acupuncture -- 1x / week. I'm hoping it will "calm" my nervous system. Just started this a couple weeks ago...
*Physical Therapy -- I just started going 2x per week to a PT who specializes in neurological and pain issues. We are working on "neuroplasticity" along with strength and flexibility.
*Mental health -- I talk to someone about anxiety / depression. This disease can get me down particularly when I start to think it may "never go away"
I hope my experience helps someone here. I will say that it has been a struggle, but over time I feel I have improved a little. My symptoms 18 months ago were quite bad and I had given up on a lot of my activities and hobbies. Now I just try and "go about my business", take care of myself the best I can and ignore the symptoms as best I can. Please feel free to ask me any questions ... also, if anyone has any recommendations for me I am grateful for your time and input
Be well.
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1 ReactionHello @51turner, Welcome to Connect. Thank you for sharing your journey with BFS and for the suggestions on how you were able to manage the day to day symptoms and maintain a moving forward attitude. @jenniferhunter mentioned having some spontaneous muscle twitches from spinal compression and found Myofascial Release Therapy helped. Here is the post earlier in this discussion - https://connect.mayoclinic.org/comment/254380/.
Have you heard of or tried Myofascial Release Therapy (MFR)?
So sorry that you are experiencing all of these symptoms. I can relate to most of them. Mine is going on 4 years. Some days better than others. Ropinirile and Clonazepam help with sleep at night. That is when mine is the worst.
Hi. I do have a suggestion, maybe to share with your physical therapist. Have you tried using a vibration plate? My husband has MMN (multifocal motor neuropathy), and has had it for 13 years. He is treated with IVIg every three weeks, which keeps him functioning pretty normally. He does get a fair amount of cramping with this disease, and has fasciculations, as well as atrophy on his right side, which is more affected than the left. Anyway... he has been going to a weight loss and wellness doctor because he needed to lose some weight for an upcoming surgery. He had been using a vibration plate as part of the treatment there, and we ended up purchasing a less expensive model for our house. He uses it 10 minutes every day, and feels that he is cramping less since he's been using it. I thought it might be worth mentioning, since they may have one at your physical therapy place.
I too, feel that exercise actually helps, and that my strength remains the same despite any cramping or weird sensations that I have. The times I notice fasciculations the tingling sensation different places in my body is when I am still.
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1 ReactionSorry to hear that. I never tried Benadryl. Melatonin helped me a lot, so did a particular type of magnesium. I still twitch all the time but it's better than it used to be.
Wonder if any actual researchers from Mayo look at this thread at all. Anyway, it's been nearly 3 years since I got BFS and I'm still twitching. I've found a few things that help mitigate it a bit, I'm back on my hypertension meds again, I take an allergy med every day, and 200mg of Doctor's Best High Absorption Magnesium in the morning and in the evening, and I take between 3-5mg of Melatonin every night, an hour before bed. I use a sleep tracker and find that when I get at least 1 hour of deep sleep, the following day I'll have very very few twitches.
I have a feeling I'm taking too much Magnesium, but it seems to work. I've tried several different brands of Magnesium, but it was this one specifically that brought some actual result. My Magnesium tests are always normal though. Several months ago my fingers started rapidly twitching. My neuro said it's nothing, but literally my entire thumb would spasm rapidly for hours. I couldn't use a mouse or keyboard at all. That was when I decided just to try another brand of Magnesium, and within a few hours of trying it the spasms stopped.
The only thing that seems to set off my twitching in a bad way is either overexerting something, like twitching something tough with my fingers, which results in rapid twitching along my forearm for an hour or so, or eating a lot of sugar which causes my biceps and leg muscles to start twitching. Benign fasciculation syndrome is some kind of curse. I probably did something stupid in life and somehow earned this.
My Urologists have concluded that resolution of the Pyrenees in my body will do nothing for the sexual sensation (Libido) that I have lost. I guess they call it E.D. So..surgery for Peyronies doesn't get me any closer to mutual pleasuring through intercourse. Gentlemen, please give me your suggestions on how to work my way out of my dilemma? Thanks, Glenn Larkin